Neuropathic pain: My dear friends I am new here... - Pain Concern

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Neuropathic pain

Capitan23 profile image
35 Replies

My dear friends I am new here.

I want some advice I am on 90 mg of morphine twice a day it doesn’t seem to be working any more I wonder if any of you knows of a better medication I had my leg amputated last year also I had an operation on my shoulder this year on January you was getting better but the pain now continue and a classified as Neuropathic pain but the drugs are not working

I am in so much pain sometimes I cannot sleep

Thank you and advance

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Capitan23 profile image
Capitan23
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35 Replies

Hi

I'm sorry you are in so much pain, I'm the same cos if my many conditions. For the pain I'm taking duloxetine, paracetamol, sometimes cuprofen, oramorph, zomorph and nortriptyline. The other meds I'm on are oxybutynin, metformin, thyroxine, adcal d3, prochlorperazine, vitamin b strong and Omeprazole. Please take care. Lynne

Capitan23 profile image
Capitan23 in reply to

Thank you very much Oldham 12 I haven’t had any of my doctor Just prescribed Zomorph and paracetamol and Gabapentin . But my body is used to it I have asked him to send me to a pain clinic that is 3 to 6 months waiting list

in reply to Capitan23

Hi

That's too long for you to wait. I did go to a couple of pain management places but didn't help much, my orthopaedics consultant has referred me to one for injections and another bone has referred me to another one gastro issues. The conditions I have are IBS, diverticulitis, gastritis, Nash with fibrosis(non alcoholic steatohepititis caused by meds from my Drs over the years) diabetes type 2, under active thyroid, fibromyalgia costochondritis, spondylitis and degeneration of the facet joint, sciatica, oa in knees to name but a few!!! Take care Lynne

Capitan23 profile image
Capitan23 in reply to

I am sorry about to hear that my deepest sympathy goes to you I know we are pain is like..As for me I just wish I could have a good night sleep and for you thank you very much for your reply I hope you get better soon and thank you again

in reply to Capitan23

Thank you. I usually get an hour at the most cos of pain. I will keep smiling , I'm glass half full person 😉

Take care Lynne

BigYin81 profile image
BigYin81

I’d say that morphine isn’t the answer and will likely make you feel worse and sluggish. Have you asked for a referral to your local chronic pain service with the view of going on a self management course.

Also epileptic style drugs might help more as they work on interrupting the signals being sent to the brain.

in reply to BigYin81

Hi

Do you know the names of any if these meds please? Take care Lynne

Capitan23 profile image
Capitan23 in reply to

No I don’t Lynne you too take care

Luis 😊

in reply to Capitan23

Thank you

Capitan23 profile image
Capitan23 in reply to BigYin81

I have asked my doctor but the waiting list is 4 to 6 months thanks

Big Yin81

in reply to Capitan23

Could he out you through as urgent cos you are in so much pain. Lynne

Capitan23 profile image
Capitan23 in reply to BigYin81

Yes I am on 90 mg 3 times day of gabapentin are used to work but no any more i’m trying to get an appointment with my GP six week waiting list is very hard to explain the problem as I only have 10 minutes.

Ncdjn profile image
Ncdjn in reply to Capitan23

You can book a double appointment and pregabalin are also a drug like gabapentin

in reply to Capitan23

Could you go down to the Drs first thing in the morning. I go down for about 7:50 ready for them opening,, it's the only way I can get an emergency appointment. Take care Lynne

Capitan23 profile image
Capitan23 in reply to

I had an emergency appointment yesterday at 4:30 he has change my medication run into gabbling

You might want to think about a visit to A & E.

Capitan23 profile image
Capitan23 in reply to

Thank you I can’t do that I am wheelchair I only have one leg . I lost ??

JRyder profile image
JRyder

Hi

Sorry to hear about your your situation.

Most drugs for pain have a limited time for which they work. Morphine is one of these.

I've had pain for 11years.

Amitryptiline worked (80%) pain relief for about 18months.

Lyrica helped for around 4years.

I've always been reluctant to try larger and larger doses of the same drug as my system get 'used' to them., preferring to switch to another with the idea of being able to re use drugs in a few years if required.

All drugs have their side effects in my experience none are perfect/take away all pain or are effective for ever.

You probably need to be persistent on your own behalf.

Hope that helps.

Best wishes

Billyboy2u profile image
Billyboy2u

I’m like you guys. I’ve even made to feel like I’m some kind of druggie at my GPS. I was told don’t go down to A&E as I’ve put on your notes not to interfere with morphine reduction

I was on 170 mg Morphine a day but now 120 mg. I used to work had a social life but now I’m housebound and can’t sleep or walk but still told I’m fit for work.

I too have asked to go to a pain clinic but told the waiting list is too long at the moment. So I feel for you guys who feel left to hang out and dry.

Just don’t understand the GPs mentality lately?

Hope you find a way out guys

TheBear55 profile image
TheBear55 in reply to Billyboy2u

Your GP CANNOT refuse to refer you to a chronic pain specialist. It's quite simply outside their remit to do so. Ask again and if your GP refuses ask for an appointment with the practice manager.

waylay profile image
waylay in reply to Billyboy2u

Oxford Medical Recommendations. They appear to think that we're all on too many opioids.

Capitan23 profile image
Capitan23

I”m on 120 mg Morphing a day plus 90 mg of gabapentin -3 times a day

Same to me the waiting list 3 to 4 months . They don’t Care.

cyberbarn profile image
cyberbarn

You can ask for a double appointment with your GP so that you have 20 minutes. That might give you more time to sort something out. As others have said, if the morphine isn't working, it isn't the right thing to be using.

Capitan23 profile image
Capitan23 in reply to cyberbarn

I have an appointment today at 4:30

I will see if he can do anything

Sort this problem out many thanks for your reply cyberbarn..

Billyboy2u profile image
Billyboy2u in reply to cyberbarn

That’s the point Morphine was working until they reduced it ?

TheBear55 profile image
TheBear55

Tramadol and pregabalin have been the most helpful for me. I also take paracetamol & Naproxen for lower spinal pain. The four drugs combined seem to keep the pressure and pain under some degree of control. The main pain centres are in my thigh, foot, hip and my nuts. Yeah I know man. Like I've just been hoofed in the balls, that horrible nauseating pain. Almost constant, but the pregabalin seems to have provided the most help.

I hope and prey this helps you in some way.

Capitan23 profile image
Capitan23 in reply to TheBear55

Thank you for your advice

TheBear55

TheBear55 profile image
TheBear55 in reply to Capitan23

More than welcome. And I'm here to chat to when you're going through a bad phase. CBT oil is also well worth a try.

TheBear55 profile image
TheBear55 in reply to Capitan23

I've recently seen my chronic pain specialist; in order to try to lower the pain levels I've been prescribed Ketamine cream for topical treatment. I'm going to have a Lidocaine infusion next week and have arranged for a nerve block to be inserted into my lower spine. There are plenty of other treatments out there, chin up and be ready for battle. I'm really lucky, I have possibly the best GP in the world and a pain specialist who really cares about me. Always here for you. 👍🏻

midashomes64 profile image
midashomes64 in reply to TheBear55

Hi there, just been reading your post from 7 months ago, how did your infusion work out and the nerve block work, I'm in so much pain, hoping to see a pain specialist soon, just want to find out what has worked for yourself

Hi

I use CBD oil heat rub which seems to help my lower back a little bit. Please let us know how you go on with Gp. Like thebear55 said they cannot refuse to refer you. Please take care Lynne

Capitan23 profile image
Capitan23 in reply to

Morning I saw my doctor yesterday he has referred to the pain clinic. Also change my medication from.Gabapentin to Pregabeling. Hope that will work also gave me more morphine 10 and 20 and 30 mg so we can reduce myself thank you for asking Oldham 12

PainConcernProjects profile image
PainConcernProjectsPartnerCommunity ChampionPain Concern

Hi Capitan23,

Pain Concern has produced a leaflet about Neuropathic pain which might have information to help you manage. You can find it here: painconcern.org.uk/neuropat...

Also, the most recent episodes of our radio programme Airing Pain is a two-part special on neuropathic pain management. See our pinned posts for details (episode 116 is currently not live but should be uploaded to our website today).

I hope these resources can help.

The PC team

Capitan23 profile image
Capitan23

I would love to know more about it

Many thanks

Capitan23 profile image
Capitan23

I am very impressed.

Can I ask you a question have you got one “

I am thinking of purchasing the one the One that you sit on the wheelchair ??

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